Living with epidermolysis bullosa has a significant impact on an individual’s quality of life. Recent studies over the past decade have identified the extent of how this condition affects individual patients and their families. The identification of specific areas which are impacted by EB facilitates better patient management as well as exploring other areas such as psychological and social supports in which research and awareness is currently lacking. The development of an EB-specific quality of life tool also gives scope for longitudinal measurement of patient conditions in order to evaluate new and future interventions.